Happy 2nd Birthday, Vivian!

It’s official. We’re into terrible-twos territory. Vivian turned 2-years-old just over a week ago. We all had a cold that week, so we postponed cake until yesterday.

2nd Birthday Smile

The cake itself was enjoyed by all. We ordered a cake from Cakes by Anna, who makes amazing cakes here in Christchurch. The got a lovely small lemon, lime and raspberry one full of tangy, tart flavors that Vivian likes in the hopes that she’d actually want to eat some. It usually has gin in the icing but that was swapped out for raspberries and it usually comes with heaps of toasted coconut on top, but that texture would’ve been vetoed by the birthday girl. It was delicious.

Vivian actually took a few swipes at the icing this time and then promptly dropped raspberries all over the place.

Touching The Cake

She especially enjoyed being sung to, as long as it was in an octave higher than anyone would normally use ;)

#happy belated birthday to our beautiful munchkin @elemunknz #hopeforvivian

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It was pretty adorable and fun for the few minutes it lasted. She quickly exclaimed that she’d had enough of this cake thing and wanted back down to roll around on the floor.

Tasting Icing

Her actual birthday was hard to swallow for me; I actually forgot it was her birthday until I got to work, and then I felt guilty for not remembering until then. Mom of the year! Then I wished I had better memories of the day itself…and for the first few minutes I was home that evening, it was hard to think about while looking at her. Hard to wonder if we could have changed anything on the night she was born, so that the difficulties she has faced didn’t have to happen. The what ifs, the should haves, they shouldn’t matter anymore.

They’ve still crept in, unwanted, usually as I’m trying to drift off to sleep. They have still been my faithful companions for 2 years, during quiet moments in the car. While Vivian has cried and kicked through the night, after all our singing and bouncing and rocking has failed her. When I’ve seen how tired Ben is and when I’ve seen the worry flicker across his face. When I’ve looked at other kids her age and wondered if she would do the things they do, if she could. If her injury hadn’t happened.

And then I looked at her again, and she smiled as I said hello and she said hello in her Vivian way. And the what ifs all melted away. She giggled and it was OK again.

Birthday Cake

I asked Ben how he was feeling after Vivian finished giggling, and he just said he was tired. He didn’t realize I meant how he was feeling in the big scheme of things. It creeps up on him in different ways than it does me. The other day he told me he noticed Vivian seemed to get really frustrated that she couldn’t move in the direction she wanted to go in and she looked around and started to cry. It made him sad to think that she could be getting more and more frustrated each day when she wants to do things but her body doesn’t listen fast enough. It made me sad to know he was sad.

But we continue to push on. And she is amazing, regardless of how we thought things would happen when she was born. We don’t allow ourselves to stay in sad what if land for very long because it doesn’t help anything. And honestly, nobody’s got time for that!

2nd birthday #hopeforvivian

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Vivian’s been living up to the terrible-two stereotype. It’s mostly sleeping issues still. Some nights it’s normal toddler waking, but most of the time it’s discomfort. Kicking and crying, arching and bucking. It’s not fun for anyone, especially Vivian. There could be some teething mixed in — two-year molars? — but we can’t know for sure.

We do know her motility seems normal at the moment, and she’s not refluxy, so we’re stumped. We hope it passes soon.

She threw a tantrum last night when I was trying to put her shoes on, so I could get her into the standing frame. She wanted to be on her stomach and I kept rolling her over to her back. You would think the world had ended! I didn’t blame her. Who wants to be torn away from the amazing sliding panel on the entertainment unit? How could being stuck in a standing frame ever compare to the wonderful ‘THWACK!’ the panel makes when you roll it hard enough to hit the other side and bounce back to the middle?

She’s definitely developing her ability to say no, in her own Vivian ways. And also to say yes. It’s amazing to see how much she truly gets, that I didn’t realize she was getting.

I don’t even know where to start on updates.

Sleeping:

More of the above. Ben and I still attempting to do the shift sleeping to cover wake ups, although I am now working full-time so it’s harder to make sure we’re all getting good sleep. I feel incredibly guilty that Ben wants me to get the most sleep, because he thinks he can catch up on sleep when she naps; some days she doesn’t want to nap so he gets shafted. I think we manage to go to sleep at the same time maybe once a week, if that.

Vivian is understandably fussy on days where she has had shit sleep overnight. It doesn’t help her therapy or learning if she’s exhausted.

Currently waiting to meet with ACC to discuss sleep study options. May end up finally going to Auckland to the Wilson Centre in the Spring.

Physical therapy: She’s making amazing progress with standing for longer and longer periods. We removed her knee guards from her standing frame probably 8-10 weeks ago? and it was very hard work for her to stand without them supporting her knees. You would have to keep a super close eye to make sure she wasn’t faltering and slouching in her frame. Now she will happily stand for 30-40 minutes and watch a Baby Einstein show, alternating her weight back and forth from left to right legs and playing with throwing her weight backwards and forward in the frame. I am sure she’s not supposed to do that, but I don’t see how we can really stop her. Some days this is easier than others, but I guess that’s life.

Leaning

After she spends that time in her standing frame, she’s starting to do some freestanding with just your hands on her hips for support. Then she gets tired of this after a few minutes and wants to lean on the entertainment unit. I’m well aware no child should watch TV that close. It’s only for a minute or two each day,  so hold your horses.

I wish we had a therapeutic bench for her that was a better height, as the unit is actually too short for her and she has to lean down/bend at the waist more than I’d like her to. It’s still amazing she even wants to do that after standing for so long. She is getting so much stronger now.

We’re still working on sitting independently for longer periods of time. It’s all about balance and really, Vivian’s want to do it. She will often lean back to rest on you simply because she can. She’s stubborn, what can I say?

Almost starting to sit up by herself #hopeforvivian #hie

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She’ll now prop up on her hands and knees for longer and longer periods, which only really began over the past 2-3 weeks. Before, we would get lots of angry yelling while she worked on this, because it was such hard work, and now that only really happens when she’s tired and over it. She is really sitting up quite tall, and Ben and I both saw her push up from hands and knees to just her knees for a few seconds the other day. Her PT is sure she’ll end up pushing herself over backwards from this position before she ever goes forward, but that’s how she’ll learn.

Occupational therapy (OT) Vivian’s working on accepting new textures and toys. We’re introducing new toys slowly by placing them next to her favorite toys. Not forcing her to look directly at them, but just introducing them on the peripheral in the hopes that Vivian will show interest in them. She usually just tosses them to the side to get to her favorite toy, Sammy the snail. Oddly enough, some toys she used to like have now started freaking her out, especially if they make noise. We’re not sure why exactly; perhaps she dropped one on her face while it was making noise and it frightened her?

Speech-language therapy (SLT), we are still working on Vivian using switches to make choices. Last week the SLT suggested we also use sign language when we say yes, no, more, and finished. Personally I think the hand movement between yes and no is too similar and I think it might be too small of a difference for her to pick up, because it’s hard to get her to look at your hands.

I also don’t know that she has the fine motor skills to control her hands in that manner to replicate the movement, but I guess it’s more about receptive than communicative language. I am a firm believer that she understands what we’re saying verbally anyway, due to the words she is starting to show recognition for – bottle, tickle (she’s started tickling her right arm with her left hand if you say tickle, to show she wants her arms gently stroked), brushing, finished, show on (God forbid the show ends. The world ends if the show ends!), etc.

Also still working on the book reading with switches, although it’s further down on the priority list (there’s only so much you can do in one day when you have so many things to work on!). Some days she likes it, others she hates it. Flip a coin!

Equipment updates:

Vivian probably only has an inch left in her current standing frame. I think we’re due to look at new ones very soon.

We’re currently trialing an adaptive stroller system called a Bingo Evolution. It’s pretty flash. It should last Vivian for at least 3-4 years and hopefully take all the wear and tear that goes along with it. I think it will be the one we end up going with, but there is still one more we are looking to trial at the end of the month that seems comparable.

The only thing that I’m concerned about is getting her a winter bag/foot muff thing to go over her legs when she’s in the chair, as unlike a regular pram/stroller, Vivian’s legs aren’t backed by any solid fabric in this chair. The bag part that goes with the chair is $500 to buy separately and the ACC equipment specialist said that it’s our responsibility to keep Vivian warm and dry, so ACC would not fund it.

I find this a bit ridiculous, because if Vivian did not have an ACC claim, we would not need a special chair to get her out and about, she would be in a normal pram, that would come with a normal winter bag to keep her warm and dry…so they should fund it. We’ll see what happens. I haven’t talked to our case manager about this yet. It feels petty to dig my heels in over this in the big scheme of things, but that’s $500 we could spend on clothes, food, and diapers for Vivian.

I’m also concerned about the orthopedic inserts we got for her Piedro boots. They look like they’re a bit too high in the arch area, and that they’re causing Vivian’s feet to point slightly outwards inside the boots, even if the boots are straight on. Ben said both PTs saw them and said they were fine, but it seems to me like the boots were ordered too large, with the hope that they would last Vivian longer (and therefore be cheaper for ACC), but maybe it’s me over thinking things. I might get her back into Orthoptics just to have a look at the positioning of her ankles, because the ortho lady who looked at her hips a few months ago did say to watch her ankles and if at any point it looked like she was putting weight down through her inner ankles to the inner arch of her foot, she would need to get ankle-foot orthotic braces (AFOs).

We got Vivian’s Upsee from Firefly by Leckey. It’s pretty awesome.

New #upsee fitted today! #hopeforvivian

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We’ve only used it couple of times, but should increase that on the evenings and weekends soon. It’s a two person job to get Vivian and Ben suited up, so Ben can’t really get her in it when I’m not home. Vivian has started to do some early walking with Ben while freestanding, where he moves her legs forward with his feet by shuffling very slowly, but so far isn’t moving her legs forward by herself. I hope that she shows the want to move on her own soon, in order to get to things she wants. She hasn’t really shown that real want to get from point A to B on her own as much as her PT would like, so she hasn’t looked into ordering her a gait trainer yet (walking aid that sort of looks like a backwards walker).

Eating and drinking: Vivian is really getting the hang of guiding the spoon to her mouth. Still not keen to pull the spoon out with her hand though, so she drops the spoon, lets it hang, or pushes it out with her tongue. Or, if you’re not fast enough, she quickly drops the spoon and moves her head away to get it out of her mouth while you’re holding the spoon.

Her SLT suggested we let her bring the spoon to her mouth and while we gently keep a hold of the end, quickly use one finger to keep the spoon in her hand (easier to show than explain through text), but Vivian is far too clever and quick for that mess, which is why she’s gotten faster and faster at taking her hand off the spoon once it hits her mouth. She has started to also want to put it into the side of her mouth, rather than the center, and wants to chew on the spoon, so I think we’re due for some molars soon.

Learning how to use a spoon #hie #hopeforvivian

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Vivian still doesn’t want to touch the food with her hands much. She refuses to try things if you are holding them with your fingers rather than a spoon, unless you make a huge song and dance out of booping her tongue until she tastes it. She’ll push your hand away over and over and get upset until you stop, unless you can get her to see it tastes good. This means any sort of dry solids are a no go, unless you work very, very, very hard and you are very, very, very patient, and you have an hour to spend on feeding for one meal. It is frustrating, for both parties.

She will accept almost anything on a spoon though. Even if it’s something she just refused that you were holding to her mouth. Spoon = safe. Hands = medicine? She wasn’t always this adamant about it. I am wondering if it’s a vision issue, because she is no longer wearing glasses. It doesn’t mean she can actually see perfectly, and she was far-sighted, so things up close may be blurry?

Drinking:  she is now on formula, as we didn’t want to source donor milk any longer. We figured there were younger babies who needed it and Vivian started to accept formula. So now she still gets as many bottles as she’d like of half-strength formula. Hoping to swap her to water soon, but that will be slow going.

She started showing a lot more awareness of where her tongue was and started making little sucking noises so we have begun feeding her some fruit puree from a pouch with a straw on it to hopefully start transitioning her to sucking on a cup with a straw soon. The SLT has ordered us a drinking set that has a squeezy bottle and straw with a one way valve on it, so you can squeeze the bottle to get liquid up the straw and it stays there until it’s sucked out, so Vivian won’t have to work so hard to get liquid all the way to the top of the straw. Fingers crossed it works.

Learning to suck part 2 #hie #hopeforvivian

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No more tantrums after meals when we put our hands up to say finished. But much ignoring until there’s no way to ignore than the food is gone. We quickly move on to brushing teeth and she is getting better and better with that, even starting to hold the brush if it has an Eazy-hold strap on it.

#finished but she doesn't want to be done so she's ignoring me #hopeforvivian

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Eyes: We were back at the ophthalmologist’s office last week. He thinks Vivian’s sight is OK, and that glasses aren’t going to make a huge difference (because she wasn’t tolerating them). He does not want to do surgery to correct her inward-turning eye because he thinks it may not cause that much of a difference to her development, saying that her vision is not a high priority to the rest of her development. I have heard the opposite from parents of other kids with HIE, where their child’s development has really taken off after having the surgery.

Then, in the same breath he says that the younger the patient is when they have the surgery, the better the chance of them gaining good control over their binocular vision. Most doctors perform that surgery when the child is between 1-2 years of age. I feel like that’s a cop-out, and I think that we should have it if it can help her in any way, especially if it will make it easier for her to see. er brain would no longer have to swap between eyes, which is very tiring.

It’s almost like saying because she has global developmental delays, we should concentrate on other areas than her vision because they’re more important, because she obviously has some level of vision already. If your child has had a strabismus surgery, can you please share your thoughts in the comments or email me? 

Ears/hearing: Vivian seems to be hearing fairly well when she doesn’t have her hearing aids in. So much so that the audiologist believes her hearing has improved somewhat. Unfortunately the test to determine this can’t be done while Vivian is awake so we won’t know unless she has to be put under for whatever reason in the future, but it’s something we’ll look at if Vivian ever needs surgery.

In the meantime, Vivian still wears her hearing aids for a good portion of the day, working up to full-time.

Hips & tone: Vivian is now overdue for her second round of hip x-rays…surprise surprise! And also overdue for a follow-up pediatrician/specialist appointment.

The ortho lady who arranged her first x-rays should arrange another set soon. She checked Vivian out this past week while at the Champion Centre and says she thinks her hips are fine. Increased overall tone on her right side (meaning her right side is held tighter than her left) but nothing new to worry about. If Vivian’s tone on her right side gets worse, we may have to look at botox injections when she gets older. I am hoping more standing time will help stretch out that right hamstring.

Teeth: Vivian is now seeing the hospital pediatric dentist, instead of a private dentist. He wants her back in a few weeks to monitor her molars for any signs of decay. He mentioned that kids with HIE injuries are prone to having moderate to severe enamel defects on their molars, so he wants to keep a close eye on her second set when they come in because it makes them prone to decaying. He wants us to brush after breakfast and dinner, and apply dental mousse at night while she’s asleep.

He also told us to wean her off of her bottle at night. On top us already not getting great stretches of sleep, now we meant to cut off her bottle…one of the only things that can get her back to sleep when she wakes up. I understand that milk sitting on teeth is not good, but some kids just get the shit hand when it comes to genetics and circumstances. If Vivian is one of those kids, I don’t think a bottle at night it going to change that much. If I was breastfeeding he’d have said the same thing. There are only so many battles we can fight and still be sane during the day.

I think that’s everything I can think of at the moment! Thank you for reading along and supporting us over the past 2 years. I looked back at my Facebook posts (they’ve been popping up in the “On this Day” section) and there are so many comments I didn’t get to reply to, and messages of support from so many of you. We couldn’t have made it this far without the village that is you.

Much love and drooly kisses from Vivian to you. And a cheeky grin. :)

2nd Birthday Smile 2

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A Continuation of Firsts

Melodramatic post alert.

I was talking about all sorts of firsts happening in my last post, and they’re still coming. Tomorrow we are trialing quite a big one – Vivian’s first bed is arriving in the afternoon. Much faster than I ever really wanted. It’s a junior electric bed.

I guess this is my version of what a mom of a neurotypical child goes through when they say that their baby is growing up too fast. Or maybe it’s that darn grief that I thought I’d dealt with already. I really have worked hard to move past a lot of it, so I wasn’t expecting this to be as hard as it is.

Kicking in her cot

I thought we would have a little more time to tuck her in for naps in her cot. Or to come into her room and see that she’s playing and singing in her cot. Enjoying her little patterned cot sheets and tucking things away under it, out of sight for now. Hearing her feet kick against the sides as we get her lunch or dinner ready, or hearing her squeal in delight from behind the slatted head-board, because hiccups are just the funniest things, ever.

I thought we’d have a bit more time to see if Vivian figured out she could bear weight through her arms and learn to sit up in it. To see if she would learn to pull herself up on the sides of it. To see if she would get to stand and gnaw on the rails of it and leave her story engraved there, for other babies to find and overwrite.

I thought we had at least another year of Vivian in her cot. I guess not.

The reality we’re facing is that Vivian is getting too long for our changing table. She actually is already. And since we rent our house, a home modification isn’t really an option. So to save our backs as Vivian gets longer and more awkward to lift on and off our bed or the floor, and more awkward to get dressed on our bed and in her cot, we are trialing this bed.

Too Long for This 2

I am not sold on this bed, but a trial is a trial. Somewhere in the back of my mind I’m worried that the sides won’t stop her from falling out. I know I shouldn’t bother worrying about that right now, since it’s not a realistic risk. It’s one of those things that I wish I needed to worry about already.

If Vivian’s room was bigger, we could trial a different bed, like a giant wooden cot, with very high sides. That model is too long to get in the room and still close the door (or even get through the door).

Upside Down Smile

I know I should be thankful that I can see Vivian kick about in this new bed, and play, smile, and grow in this new bed, and I really, really am. But I know I also need to allow myself this brief moment to acknowledge the hurt and this new kind of different that will become our new normal (and how we are going to have a life time of these, if we are lucky).

I know this really is for the best. And I do want the best for Vivian and for us. It’s just so surprisingly painful. Damn it. I’m so over this surprisingly painful crap.

On the bright side – it’s purple! I hope the pictures are true to life. And now I need to find some new sheets for the Vivster, who is doing very well, all firsts considered. She is taking them all in stride. Better than we are. I’ll write more about those updates tomorrow. Tonight, I need sleep while I can get it.

Missing Ophthalmologist Notes

Skip this post if you want updates on Vivian – this is more about the New Zealand medical system and how frustrating it is at times. I will be writing a Vivian update post tomorrow, I promise!

I have started the referral process for Vivian to be assessed by the Blind and Low Vision Education Network New Zealand (BLENNZ) for corticol vision impairment. I had no idea I could start this process myself and was waiting for the ophthalmologist to test Vivian for this but he didn’t. I would rather try and get a diagnosis early on so we can get some vision therapy in place sooner rather than later but he and our neurologist seem to think it’s far too early to test for this, although they have both said repeatedly that she will undoubtedly have some degree of it.

Before I realized I could self-refer Vivian, I’ve had to call the hospital’s eye specialist clinic at least a half a dozen times to get the notes/records sent to me from the appointment we had in February. They initially sent me a letter that they also sent to Vivian’s pediatrician, but I wanted another copy of her prescription for corrective lenses and any notes he took on the tests he preformed, so I could forward them on to BLENNZ with the referral form.

After a few more increasingly frustrating phone calls wanting to speak to the opthalmologist to ask why he didn’t test for CVI, I received a phone call from the opthalmologist that I sadly missed, stating that he would move up our follow-up appointment (originally set for 6 months away) and that he didn’t feel the need to test her eyes for CVI until she was 18 months old.

Well, the eye department couldn’t even produce this. They referred me on to patient information and said I would need to request the records from there (with a release form). I did this and they sent me the same letter I had already been sent… This lead to more emails between myself and patient information, who were waiting on the eye department to find the notes, because apparently I should have called the eye department for these. Hello? I did. Numerous times! They told me to call patient information!

Finally we end up with a new letter from the opthalmologist, addressed to me on 1 April…stating that there seems to be some question of whether Vivian actually needs corrective lenses (there is no question about this in my mind? I never ever insinuated that there was) and whether the corrective lenses would help with her strabismus. He then wrote that her prescription was +1.50 in each eye, which is very ‘weak’, and said that the lenses wouldn’t make a difference in the strabismus, so she didn’t need to wear them all the time if they were causing her any sensory issues.

Honestly, I think he wrote this off the top of his head, to cover his ass, and that he probably didn’t even take proper notes at our appointment. I got the optometrist to send over a copy of the prescription we’d brought in. He originally gave Vivian a prescription for +3.50 in each eye, a much stronger prescription than he is stating in the letter. The optometrist who fitted her glasses said she should wear her glasses “every waking moment”. What in the honest fudge – are we even talking about the same baby? I called the eye department again and informed them of my serious concerns about this incorrect information. Of course the opthalmologist is now on holiday until next week so we will not know if Vivian even has the correct prescription until he gets back. I’m assuming she does have the correct prescription and he was relying on memory to write this letter, as the eye department cannot find any further notes from the appointment.

Baffling. And ridiculous. And a complete waste of my time and their time. The good news is the BLENNZ Christchurch folks have contacted me and they’re coming to assess Vivian in May.

I honestly don’t know how parents are meant to navigate this system without giving up out of sheer frustration. If I wasn’t so persistent I really feel like not a lot would be done for Vivian. Super frustrating, and super tiring. It should not be this difficult.

IR4: When Running is More Than Just Exercise

Last weekend we signed up for this really, really awesome Facebook group, called I Run 4 Michael (IR4). It’s a group that pairs up runners and other athletes with kids and adults with physical or developmental difficulties that mean they may not be able to run. It started when the creator was talking about running, and a friend of his, who was battling bilateral hip dysplasia, said “you can run for me anytime!” A group was formed back in 2012, with 10 runners and 10 buddies with special needs. It now has over 30,000 members and over 11,000 matches.

I had originally read about it back when Vivian was first diagnosed with infantile spasms, but at the time we had far too much going on for me to commit to signing Vivian up.

Last week, I saw a post about IR4 again on The Mighty, and decided to finally sign up. I thought we might be on a waiting list for about 6 months or so, but by Friday Vivian was matched with a runner! Vivian’s runner lives 9,130 miles away from us here in New Zealand, and will be attempting to run that many miles for Vivian. She waited 6 months to be matched with Vivian, so there are way more runners wanting to be matched in the group.

It’s a pretty awesome thing knowing that someone across the world from us is running for Vivian and although it may not seem like something special, it really is. The posts in the Facebook group are so heartfelt and come from such a place of love and support. Our runner has been posting updates for Vivian on how far she’s run, and we post updates back for our runner about how Vivian’s day has gone.

I highly recommend signing your child up if you’re a parent of a special needs kid, or if you have any disability or special need yourself.

Every bit of support, whether practical or emotional, really does help in those dark moments, when you’re up worrying or trying to get your little one to sleep, or after a horrible day of battling with whatever problems you are facing. It is an awesome way to take stock of things and realize the progress Vivian has been making each day. I’m sure we will have weeks when our updates might not be as happy, but we will keep on keeping on, and our runner will be rooting for Vivian along the way. A small part of me feels guilty for not running myself, but one day I will get back into exercising!

And if you’re a runner, or someone who enjoys working out, please consider signing up! You might wait for a while to be matched but I can guarantee that it will be a rewarding wait. They also have a related group for siblings of kids with special needs (I Run 4 Siblings: The Unsung Heroes), where they can get matched with a runner, and a third group that matches runners with loved ones lost (Kerri On: I Run 4 Remembrance).

While I don’t know if Vivian will ever understand that someone is dedicating thousands of running miles for her from across the world, but I know Ben and I are so touched by it. We know that Vivian knows she is loved so much, even if she doesn’t know by how many.

6 Months Old

Our munchkin is now 6.5 months old, and we are just over 11 weeks seizure free. Crazy to think about how much time has passed since she arrived.

On one hand, it feels like it’s gone so quickly, and on the other, it’s been excruciatingly slow in some regards.

I still find it hard to think about what the future holds for Vivian and how different this future will be than the one we imagined. Even now some days I am overcome with sadness and I know Ben is as well, although he may not say it as often as I do.  We push it down and try to stay positive. Other babies we know are hitting milestone after milestone and we are still waiting for our first full roll. It’s so hard for us to not compare. It’s impossible for us not to compare.

At the same time, it is amazing to see the progress she is making at her own pace.

We still have very strong kicks happening now. Not just single leg kicks. Double leg kicks, like jumping jacks, and a very excited, smiling Vivian whenever she realizes you’re there with her. She’ll slowly maneuver herself to kick nearby objects, which is neat; her favorite thing to kick is one of the arms on her play gym. When she lands a good one, it causes all the toys on the play gym to shake and rattle, which she enjoys.

We are still working on improving her grasp. She doesn’t seem to reach for toys in the same way she was in October, when I posted the video of her tracking and reaching for the mobile. She now seems to reach for things in a nonchalant sort of way, not as direct or with as much purpose as she did then. I am not sure what this means. Sometimes when she snags a toy, she’ll wave it around in a way that she wouldn’t normally wave her arm around, so I’m sure she’s registering that she is holding something, but she definitely doesn’t investigate or explore toys visually for any length of time. I don’t know if this has something to do with her vision, or whether it’s something neurological, or a mixture.


Vivian_Play

We are still working on tummy time and making this an enjoyable thing. It is a bit of a struggle, but our team at the Champion Centre gave us a large foam wedge to use at home, which puts her on a slight incline. This seems to make it a bit easier for her to overcome gravity and she doesn’t complain much when she’s on that.

Tummy_Time_Smiles

We do guided rolls from front to back and back to front. I really think she may start rolling front to back before she rolls back to front. She rolls from side to side quite easily on her own and will pause on either side to listen and look at things. If we turn the radio on in her room, while she’s in her cot, she’ll turn towards the speakers to listen.

When I pick her up, I can tell if she wants to be picked up because she’ll roll slightly to one side and allow me to roll her the rest of the way so I don’t put too much stress on her spine. When she doesn’t want to be picked up, she doesn’t partially roll. I’m supposed to try getting her to do this equally on both sides, but it’s hard.

Visually,  she’s still super-sensitive to strong lights. We keep the drapes pulled in our house because the west-side of the lounge is pretty much all windows, and when the sun starts to go down it’s blinding. We can have them partially open in the morning though, and can have the drapes open in other parts of the house in the afternoon and it doesn’t affect her too much. But if we were to walk outside with her in the capsule or in our arms, without a sun cover, she would have a melt down.

We finally have an appointment set to get her vision tested in February. I’m not sure what to expect at that appointment and what they’ll be able to discern. I guess I need to read up on this a bit beforehand.

Focus

I do think we will discover she has some sensory issues down the road. She tends to panic if things brush her head or face unexpectedly,  and still prefers movement to get to sleep and to be calmed. She is still swaddled in the hammock to sleep and, for the most part, to eat. She can eat unswaddled and in arms, but she tends to not eat as much because she becomes disorganized and frustrated, so we are working on this.

Hearing-wise, we’ve been to the audiologists twice since I last posted. Vivian was fitted for new ear molds for her hearing aids two weeks ago, and they arrived this week. It’s crazy to see how much her little ears have grown, which also makes me wonder how much her head has grown or not grown. Her hearing aids have been turned up to 90% now. She will sometimes get fussy with them in at this volume, so we’re taking it slow.

I have to hand it to the team at Triton Audiology; our hearing specialist really has a gentle hand and is very patient with Vivian, and allows a lot of time at each appointment so that we’re not rushed if Vivian gets unsettled. I am so thankful for that, since we’ll be seeing them at least twice a month until Vivian’s ears don’t grow so fast. You can tell pretty quickly which medical staff have dealt with babies a lot and which haven’t and Vivian definitely puts people to the test sometimes.

We have yet another appointment at the hospital for a hearing test in January, and an ENT appointment scheduled for April.

We see her pediatrician again in the first week of January.

The main thing that the pediatrician will be looking at is her weight and feeding, which we are still working on improving. She’s having more good days than bad with feeding, which gives me hope that we’ll see a weight gain. I think the last time I posted,we were hovering around the 500-550ml daily intake mark. Today we’ve hit 700ml, which is an all time high since Vivian has been off of the steroids. If we can hit this again tomorrow and the next day, I will be amazed.

We’ve  been asked if Vivian might be ready for solids soon. I think we are miles away from this. Vivian isn’t really showing many signs of being ready (at least not in baby-led weaning terms). And because of all the medications she has takes given orally, it wouldn’t surprise me if we have trouble with solids down the road. We’ll tackle that when we need to, I guess. Again, we don’t know what will happen, and I don’t know what to expect in this area. I’m starting to get used to saying this a lot. We don’t know.

I do know that we couldn’t be more in love with her. She really has stolen our hearts and brings us such happiness. Even if she isn’t in the 90th percentile for height or weight or head circumference, she’s definitely not the same little Vivian who arrived on a dark and stormy night with such a dramatic entrance into the world. She has overcome so much and has mellowed out a lot since coming home from the hospital.

Here’s to more progress in the next six months, and no more seizures!

Milestones and Memories

Another week has flown by and I’m happy to report that Vivian is still seizure free! :) This is so awesome. *whispers* Day 25.

On Monday we went to Vivian’s first session at the Champion Centre. It was pretty interesting, although it was very short! The team got a chance to see Vivian in action under a play gym and got to know us as a family a bit more. I think at this point it will be a slow and steady progression (I hope) to new things with her there.

She is also hitting some milestones in the coordination department with her visual tracking and reaching for toys. We noticed her showing some real determination last week whenever she was on the changing table where her mobile is. Although she would be tracking the toys visually, she would be grabbing off to the side and not really grabbing at the ones she was looking at. Then suddenly something clicked a few days ago and she is now actively trying to grab the one she is looking at for the most part! She does a bit of both in the video below.

 

She is using her right hand more than her left at the moment, and the physiotherapist at the Champion Centre showed us how to stroke her left arm to give her some spacial awareness of where her arm is. As soon as she did that, Vivian started reaching with her left arm as well.  You can see she likes to keep her hands in fists most of the time, unless she’s really relaxed. Hoping this continues to improve with time, too.

She keeps surprising us in many ways! I can’t wait to see if she can roll over eventually. From the way she kicks about when she’s upset, I think she will be able to.

We had a follow-up with the ENT specialist on Tuesday morning. Vivian has moderate conductive hearing loss in both ears and they’re still unsure as to exactly what is causing this. She is being referred to an audiology clinic to get fitted for hearing aids sometime soon. It makes me wonder how much of a difference we will see once she has the hearing aids in and on. I am afraid that she won’t like them or that we’ll struggle with taking them out/putting them in during the right situations. She is so easily over stimulated, I would hate to add this to her plate!

We also had an appointment with neurology on Tuesday (haven’t seen her actual neurologist for a few weeks. Saw the registrar again) and because Vivian is still seizure-free, we have started weaning her off of the prednisone! So her daily dose of 8ml has been lowered to 6ml per day.

You would think this would mean an improvement in Vivian’s overall mood but we’ve seen the opposite effect. Vivian is back to having some extremely unsettled periods (non-stop high-pitched screaming where nothing seems to sooth her) and she’s returned to not eating as well, like she was before we began the steroids. I have read this is a pretty common side effect of weaning off steroids appetite suppression and irritability. It’s made for a rough couple of nights so far, but luckily she is asleep as I type now. Long may it continue!

I am hoping that after the wean she will continue to eat better than she did before the steroids and not lose weight, but time will tell. She’s now weighing in at 6.15kg, which is up 750g from what she weighed the day we started the prednisone, 3 weeks ago. You can definitely see it in her face! Chubby cheeks galore.

Although she is extremely unsettled sometimes, her smiles have returned in full force when she is happy, and she’s started talking to us nonstop as of yesterday. I’m talking full-on conversations! So cute. And really great eye contact during them. It really cracks us up when she just talks and talks and talks.

She’s started staring into my eyes very intently at night after Ben’s gone to bed and smiling at me. And enjoying kisses! So, so amazed at how happy this makes me. We were told that she may never be able to register what she was seeing at all due to the damage in the visual center of her brain and look at what she can do already.

The only downside to our new googly-eyed girl is Vivian seems to only have eyes for me at the moment! Poor Ben is getting the huge, adorable frown whenever he kisses her, or worse, real tears.  Hopefully this improves quickly, because I’m due back at work on Monday! I already feel guilty just thinking about her crying at him while I’m gone :( I didn’t think it would be this hard to go back to work. Maybe under normal circumstances, it wouldn’t be, but alas. Our ride has been anything but normal from the get go with Miss Vivian.

I’m tucking all of these magical moments away to save for later. I wish memories didn’t fade the way they often do. I realized last week, once my nose cleared up after my cold passed, that Vivian no longer has that newborn smell :( It disappeared when we were sick and it made me SO sad to discover that it was gone! I actually cried. I keep sniffing her head hoping it’s back, but so far it hasn’t been. If I had known before I got sick that it might be the last time I smelled it, I would have smelled it a lot more often. For shame!

Hoping the seizures continue to stay gone. And that her newborn smell magically comes back. :)

How has your week been?

The days are blurring together

Well, we’ve made it past the 2-week mark of no seizures! 16 days today. It’s really fantastic. I again don’t want to jinx anything, so don’t want to dwell on it!

The days are blurring together and we are so exhausted. Emotionally I am all over the place. Vivian is doing well, but she is definitely not the happy, smiling baby she was before we started the steroids. It’s been days since we’ve gotten a smile out of her and she is just so hungry *all* the time. Like hulk hungry. Hangry even. I’m surprised she hasn’t turned green and split her onesies yet. She’s cat napping instead of getting good naps in and on top of that, has stopped sleeping through the night in two good chunks. Any time she wakes, she is hangry, no matter if she’s been asleep 3 minutes or 30 minutes. It’s like she has no off switch on her stomach.

This means she is guzzling through the donor breast milk we had stashed and I have spent most of the past week stressing about being able to meet her feeding needs. One of our donors is going back to work this month and the other two screened donors who helped while Vivian was in hospital have had things come up which mean they can no longer donate currently either.

We got very lucky and found a Mom up in New Plymouth with a decent frozen stash, along with a super lovely mother out in Leeston who read Vivian’s story and wanted to help, so we are good for milk for the next little while! I am hoping this is enough time for me to source a few new donors so we are not so reliant on one person’s supply. I so wish I could produce more milk for Vivian. It is the most awkward and humbling experience to ask someone else to share their baby’s food with Vivian. I am forever thankful to the ladies who have helped us thus far in making sure Vivian has breast milk and would love to continue using breast milk as long as we possibly can.

On top of Ben and I being sick last week, Vivian did end up catching whatever virus it was, and we ended up taking her into the hospital last Thursday to get checked out. Normally I probably wouldn’t have taken her in, but her doctor advised us to bring her in if she gets sick while on the course of steroids. She did get the all clear, but she developed a pretty chesty little cough and has since lost her voice (something Ben isn’t particularly upset over). She also has a case of thrush in her mouth and on her bum, so we have to treat her for that. Apparently steroids can mess with babies’ systems in that way as well, and thrush/yeast infections are quite common while on steroids.

On Saturday, we caught up with some friends who helped change the oil on our car and ate yummy donuts. It was neat getting out of the house with Ben, and not to a doctor’s appointment. Vivian was pretty good during that visit and even took a nap on me! :)

Sunday, a lovely lady came to see us and dropped off some breastfeeding supplements we ordered from the US. Although we’ve only known her a short while, she is really awesome to talk to and is a great source of positivity and encouragement about all things breastfeeding-related. She also referred us to Bellyful, and we are waiting to see if we can be accepted twice, as they already helped us out with some tasty meals back in July.

Monday, we met the team at Champion Centre; we start weekly appointments there next Monday. The specialists seem really wonderful and I hope that Vivian thrives with their help.  I am still very disappointed with how long the referral process took with this, because I’m now due back to work on the 22nd of this month. I get to go to ONE appointment there with Vivian. We have been home for almost 10 weeks now. I know the important thing is that she is going at all, but I wonder how much easier our journey could have been thus far if we had gotten the support we needed from the get go with this, especially when we were struggling so, so hard with Vivian’s feeding.

Tuesday, Vivian and I had lunch with a couple local Moms with whom I started my pregnancy journey. They have been a strong source of support for Ben and I and so much fun to get to know online. It was awesome meeting them in person and talking with them and seeing how lively their little ones are. At the same time, it was hard to see how much their babies are doing and where Vivian is in comparison. It’s not like I actively want to compare her to them. It’s just very hard to ignore when it’s right in front of me. I got a bit unexpectedly teary while I was there and felt pretty embarrassed about it. Hoping that outings and catch-ups will get easier, but I think it will take me a long time to see other babies and not feel slightly sad/disappointed/envious/etc. I think any new mom of a special needs child would feel the same way for a bit, at least in the beginning.

Yesterday, Vivian had an audiology appointment for more hearing tests and at the same time I had my follow-up with the OB who performed my cesarean section. The hearing test didn’t go so well this time because Vivian didn’t want to sleep while we were there and we were only able to get testing done on one of her ears in the last 15 minutes of the 2.25-hour appointment. Directly after that appointment, we were due at a neurology follow-up where Vivian’s blood pressure and urine were tested. Blood pressure was in the high-end of normal, urine was clear, and we were told that Vivian’s EEG showed no abnormal/epileptic activity. If we continue to see no seizures, we may be able to start weaning Vivian off the steroids at 4 weeks instead of 6 weeks, which is awesome news.

Because there was no abnormal activity on the EEG, the registrar said that if Vivian’s seizures were controlled by the steroids, they would not be doing another EEG. I’m not sure if this is normal for IS treatment or not. We have another weekly neuro appointment next Wednesday, so I will be asking for more information about the EEG results then, because although there was no seizure activity, I’d still like to know what else it showed. Hopefully we will actually see the neurologist this time, instead of his registrar. She was really nice and did answer all of the questions we had at the time, though.

Today we have a Te Puawaitanga nurse appointment for a well child check. Thank god this one is at home; we all just need a day at home after a busy day like today. Vivian was so over tired by the time we got home. Not a happy camper! But trips out are getting easier. Maybe it’s an age thing? She does still seem to be easier to settle now than she was a month ago, thank goodness.

So, lots of good points over the past week to be thankful for.

I just want to sleep. For a very long time. I know this will never be possible, ever! I try not to mourn the days of being able to just nap as long as I wanted! At least I know THAT is at least a normal part of parenthood.

Tummy Time

 

New life, in more ways than one

Forgive me bloggers, for I have disappeared. It has been over a year since my last post.

And so much in my life has changed. The past year has been an absolute whirlwind of change, and I welcomed it with open arms.

My job in Wellington ended in May last year. Thanks to a wonderful woman I used to work for, I was blessed to begin two part-time jobs in Christchurch, to make up one full-time job. For the first three months after my job ended, I lived in Christchurch and Ben stayed in Wellington with our lovely kitties until our lease there ended.

Ben and the kitties joined me in July, when we were lucky to find a reasonably priced rental in Christchurch among horrible rising rent prices. So many houses were damaged or demolished due to the earthquakes, which has resulted in a shortage of affordable housing here. It’s not a spacious house, by any means; it’s about half the size of our home on the Kapiti Coast, and only $30 cheaper per week, but it’s a good little house.

Ben found a new job as well and life for us resumed the familiarity that we once knew; we were home again.

While we were up north, I was on my way to being diagnosed with polycystic ovarian syndrome. I had started that journey before we left Christchurch in 2012, but it took forever to find a doctor’s office that was accepting new patients on the Kapiti Coast/in Wellington. I picked it up again when I returned to Christchurch. My very first blood tests pointed to the possibility of me actually being pregnant, which hadn’t happened on its own even though we hadn’t been preventing pregnancy for over two years. Ben and I really thought it wasn’t possible for us to conceive naturally at that point, but alas, we finally did it!

We built dreams and hopes for the new life I was busy growing. We planned and prepared. We were so ready. We had been waiting for this for so long.

In June 2014, our family grew by two tiny feet when our daughter was born. Her birth story and journey thus far will come in another post, one that I desperately need to write for myself.

For now, I am amazed at how quickly days blur into nights and back to days again. And at how well I am surviving on naps (reminding me of my days as a breakfast chef). And how astonishing it is that I can love someone so fiercely that I’ve only known for two months. And how lucky I am to have such a devoted husband, who is becoming the most wonderful father to Vivian.

Vivian

What’s new in your world?

Busy spring is busy

Just when I think I’ve settled into a nice routine, another big change happens.  There’s no way I could’ve done the Ultimate Blog Challenge this month.  Kudos to those of you who are!  And to those of you preparing to do NaNoWriMo.

No more working from home on the weekends soon.  I’ll be working a more solid Monday-Friday.  No more days off in the middle of the week that were so handy for running errands!  I have never had weekends off for any extended period of time, so it will be different.

Ben’s job has had a major delay that means he has the next 2-3 weeks off.  Although we could really use the money, part of me is sort of happy about that, because I’ll have more home-cooked meals made by his hands.  I enjoy cooking, but I am a firm believer that things taste better when someone else cooks for me.    He’ll have more time to bake new healthy treats for us.  I keep meaning to post a bran muffin recipe that he’s been making every two weeks or so.  Must do that this week sometime.

Weeds, weeds, everywhere!Garden updates:  I’ve discovered that this place is heaven for weeds.  There are thousands of weeds sprouting in that veggie bed…I’m going to spend the next year picking them out.  It’s horrible.  I’m guessing this is because the landlord just turned the soil over before we moved in.  I really don’t know.  I never had so many weeds to get rid of in Christchurch at either house we lived in.

My arch-enemy cleavers is here as well, smiling at me from beneath the camellias and mandarin bush out front. Ok, I’ll stop grumbling now!

I planted some peas and beans in the garden bed about 10 days ago, and remember dreading the weather shortly after that.  So much rain in the past week and a half — some really torrential downpours — I thought for sure the peas and beans wouldn’t sprout due to rot or being washed out.  As I was glaring at the weeds today, I spied them pushing through the soil, so I’m very happy about that!  Will need to get some twine to make a trellis for them soon.

Growing cherries on the treeI’m fairly sure the lovely flowering trees on this property are cherry trees now.  Still not sure if they are eating-cherries or not, though!  They are still beautiful, even without their flowers, but they add to the weeds too.  Hundreds of cherry seedlings beneath the trees to weed out…it’s going to take me two weekends to get all the weeding done around here!   Not grumbling again, I swear.  I’m sure it’ll be good exercise.

And on the topic of exercise, I’ve managed to lose 12 pounds since August.  I’m feeling really good about that.  Ben and I joined a gym and for the first time I have a regular exercise commitment to myself.  I really enjoy Ben being my work-out buddy and I think having him involved is the difference this time around!  While he was working he was too tired to go, so I have been by myself quite a few times.  I am down a pants size and I can finally see my collarbone again.  Another thing I’m happy about.

Taking time to note these positives is what keeps me motivated!  Only 38 pounds to go to reach my long-term goal.

Have you made any goals lately?  Reached any goals lately? Let me know!

Pushing past challenges & finding joy

Progress isn’t always easy, as I’m sure you know.  Sometimes the most satisfying type of progress is the kind you have to work at.  The kind that puts you outside of your comfort zone.

You might find you have to grow a bit in order to stop feeling overwhelmed.  Push past the discomfort and fear of failure and make things happen.

I’ve discovered that’s what’s happened to me over the winter months.  It was so easy to get overwhelmed with the move, a new rent rate, new city, new neighborhood.

A new budget to make my pay go further while Ben looked for a job.  Having to make sure I actually have a packed lunch and snack, instead of wandering into the kitchen while working from home.

A new morning routine to make sure I’m up and on the early train in to work in a new office environment.  New commute costs.  New car costs (we’ve never had a car while I’ve been in New Zealand).

On top of all that I’m certain that I suffer from SAD — seasonal affective disorder, so I felt really crappy for a lot of this time, and was very tense, which didn’t help my marriage any.  Ben and I fought a lot during the first few weeks we were here.  I think most of it was the stress from everything being so different, and all the adjustments we were having to make.  All of these new things to adjust to and new challenges to push past at once where a lot for us to take in.

I realize that with those new challenges came some amazing rewards to enjoy.

A new house to make into a home.   A new garden with new secrets and new plants to discover.  New sounds to enjoy as I work in the garden.

I’d never had the privilege of hearing a tui in person before moving up here. If you’ve never heard one before, you should check out this video of a tui singing:

On a quiet night with a gentle breeze, I can hear the waves crashing nearby.  It’s a wonderfully calming sound, and I hadn’t realized I actually missed living near the ocean.  It felt a bit like coming home when we moved here.

Ben really loves the area we moved to, and it makes me really happy that he does.  If he hated it I would feel horrible, because we moved here for my job.  He has luckily found some temporary work on a construction site not too far away, where a retirement village is being built.   I’m hopeful that he’ll find something he really enjoys soon, as I know it’s not what he really would like to do for work.

Spring has definitely given me a different outlook on everything.  More sunlight hours means more time for me to get things done.  The sun also helps me not feel so overwhelmed by things that would seem insurmountable during the dark & dreary months of winter.   I feel much happier about all the changes we’ve made now that things have settled down and we’re able to actually take time and enjoy the little things.

Do you ever notice you feel down or in a bit of a rut during winter months only to have the sun help you break through it all come spring?

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